Getting ready to board the rollercoaster

No zipper, but not for long

The fun is about to begin.  We will be admitted to Boston Children's cardiac ward Sunday night.  

Its amazing how much can change in just a short time.  10 weeks ago, I was still pregnant, the school year had just begun and I was feeling relief that I had made it to the first day.  I was feeling stressed because my sub had quit on the Friday before school started. On the second day of school, I learned that I would be induced 2 days later and while I would have been happy to wait another week for professional and personal reasons, I was mostly ready to welcome our second child to our family, far more ready than I was when I learned I was to be induced with Hope.  9 weeks ago, on September 5th, we brought Mireya home. The past 9 weeks have been unexpected.  While they have passed quickly and it has certainly been busy, it has also been quiet, amazing, wonderful, overwhelming, and terrifying all at the same time.  We never expected Miss M to get to come home so soon.  We expected immediate transfer to the CICU at Children's, not a visit to the NICU at Beth Israel.  We expected a 4-6 week hospital stay and to bring her home sometime in October, similar to Hope.  It would have been a long haul, but we knew what to expect.  When we were told she'd go home to grow, we didn't know what to expect.  We had never had a newborn.  Uncharted territory.  A few weeks ago we passed the milestone of the age that Hope was when she came home, and we were back in familiar territory.  We survived and while it is now a blur, I'm glad I got to have the typical healthy newborn experience.  In some ways I feel like I got back a piece of what CHD has taken from me.

The first week or so was terrifying for me.  Mireya slept ALL THE TIME.  We had to wake her to eat more often than not.  I was worried this was an effect of her heart, but in fact, she's just a kid who really likes her sleep.   I didn't know exactly how much newborns sleep.  I expected to have a small baby that did nothing but cry, but instead she did nothing but sleep.  Terrifying for this heart mom.

It took us a few weeks to figure her out.  The first few weeks she didn't really gain weight.  We were sent home and I was told I could breastfeed, but because we wanted to see her gain weight, I was to offer her a bottle and pump too.  It was exhausting.  All we did all day was feed.  She didn't gain.  We learned we weren't waking her enough.  So we started waking her every 2-3 hours.  She still didn't gain.  We added formula.  Minimal weight gain...  I had thought she was latching well, but indeed, she was not, so I started using a nipple shield around 3 weeks and noticed a remarkable difference.  We suspect her mouth just wasn't big enough.  It seemed to be going so well, that we dropped the bottles. Still only minimal gain.  At this point, she was 4 weeks old and our cardiologist started threatening to send us to nutrition, where they would likely recommend a feeding tube.  We bargained for one more week and promised to give her a formula fortified feed twice a day, giving her extra calories. This did the trick.  By the following week, she had gained half a pound and has continued to gain about a half pound a week since.  At today's weigh-in, she was 8lbs 14 oz.  We were really hoping for 9, but she was close, and should be comfortably over 9 by her surgery next week.

full belly

Here are some pictures from the early days still in the NICU, her homecoming, and her first days at home...  

Sweetness

First outfit

Sweet sleeping baby

All ready to go home

Leaving Beth Israel

Out to lunch at Kelly's Roast Beef on the way home

Home sweet home

Her signature face - "Puss"

"Puss" and her daddy

But back to reality next week.  Back to our 'normal'.  As we knew when we brought her home we would have to give her back.  For a little bit anyway.   Like I said above, on Sunday we will be admitted to Boston Children's in preparation for a catheterization on Monday.  This will give her surgeon a road map of her complicated heart.  The current plan is that she will be inpatient until Tuesday, then we will go home for a night before returning on Wednesday for her first open heart surgery.  This surgery will be to place a conduit between her heart and lungs.  She will be in the CICU for 4-5 days, inpatient for a total of a week to two weeks.  We have a 50/50 chance of getting home in time for Thanksgiving.  

We've had a lot of doctor's appointments.  About one a week.  Its funny, while I was pregnant, I was very focused on the fact that I had about 1 appointment a week starting at about 19 weeks (when they first noticed the overriding aorta).  For whatever reason, I never stopped to think it would continue after she was born.  So for the last 30 weeks, I have gone to at least one doctors appointment a week, with a few exceptions. This isn't going to stop anytime soon, either.  Her first week home we went to meet her pediatrician, had a cardiology appointment, then had a follow up with the pediatrician.  The cardio appointment included a CT scan, so that we could get better imaging of her heart, in particular, the collaterals.  Here she is getting ready to go in, in her johnny, and as she excited the tube.  It was quite the experience to send your one week old into a CT scan.  We got to watch and it felt very science fiction.

Ready for her scan

Coming out of the CT scan

This is what she thought of the situation

The CT scan confirmed what we suspected and gave us a little more detail.  We were able to see 2 big collaterals and a couple small ones, confirming the MAPCAs diagnosis.  This confirmed that our plan of action to perform surgery at about 2-3 months was a good one.  Once we had this solid diagnosis, we could move forward with scheduling the surgery and picking a surgeon.  Hope's surgeon is no longer an option because he is now in Louisville, KY, so we were given the choice between Dr Emani and Dr Baird.   While I've heard both names, I didn't have any idea who was better, so we let Dr Friedman pick for us.  A week or so later I got a call giving me a date, Nov 16, and our surgeon's name, Dr Christopher Baird.  Most of the rest of our appointments have been follow-up visits and weight checks, somewhat alternating between the pediatrician, who has been doing the normal baby stuff and keeping an eye on her weight, and the cardiologist.   She has been doing well, other than normal baby stuff - blocked tear ducts that made her eyes all crusty and gross for the first 8 weeks as well as a bout of thrush, a yeast infection in her mouth.  No blue spells, no heavy breathing, none of the things we've been taught to look out for.  Her O2 levels have been slowly declining, just an indicator that we are right to have the surgery Nov 16.  At today's appointment, they were in the upper 70s to low 80s.  She started at 92-95 when she was born.  Hope is 99-100, as are heart healthy people.

It has been nice getting to be a normal family adjusting to their newborn.  She is a pleasant little baby and as I said earlier, she likes to sleep.  Most nights I have to wake her to eat around 3:30-4.  She then goes right back down until about 8.  She rarely cries, unless she's hungry.  Her pediatrician can't get over how chill she is.  I can't believe it's possible, but she's even more chill than Hope was.  The only difference is that she prefers to be held.  She does not want to be put down for more than 10 minutes most days.   The dust is finally starting to settle and she is currently peacefully napping in her swing, but that could change any minute.

Daddy and his girls

In her first 6 weeks at home, it was just me and Mireya.  I loved having this one-on-one time to get to know her, while Hope stayed in the daycare routine.  We went to many of the same activities I used to take Hope to when she was under a year.  It was great and just like with Hope, I met some great moms with babies close in age to Mireya.  My favorite activity is the Arlington JFCS baby group on Fridays, followed by lunch with the moms and dads.  I have met so many wonderful moms and dads through this group, both with Hope and now with Mireya.  I am still in touch with the moms from my time with Hope, we are committed to our kids growing up knowing each other.  I hope to continue to get to go to my Friday group once a month or so.

1 week old and chillin at the Arlington baby group

Hope has been home with us about 2.5 weeks now.  It's overwhelming but I've been trying to find activities to keep her busy in the mornings.  She naps most of the afternoon.  Most days we get out and do something and so far, its not easy, but we're all adjusting.  Some days are harder than others and both girls can be incredibly needy.  They tend to feed off of one another, so it just makes it double the fun.

Hope was "helping"

Best friends already

Lil' Red Sox fan

When Mireya was 3 weeks old, Sanders had to have dental surgery, so I took Mireya with me while my parents entertained Hope.  We had to kill some time while the traffic died down, so I was able to get her out for her first hike!  Here we are at Noanet Woods in Dover.  Out in the distance you can see Boston.  It felt great to get outdoors and to introduce her to nature.  She even got to have her first "picnic" on top of this mountain :)  As we were hiking back, some ladies that I suspect had bigger kids, stopped me to fuss over my newborn.  They congratulated me for getting both of us out there and insisted on taking a picture.  They told me how beautiful I was.   It was really empowering.  Since then, M has been on two more hikes.

First hike!

Hiking at Great Brook for Hope's birthday

More pictures of everyday life....

Tummy time is exhausting

Learning to smile (around 6 weeks)...

6 weeks

7 weeks

8 weeks

9 weeks

Bathtime...

Naptime...

Baby burrito

Daddy makes a comfortable place to sleep

Already in 3 month clothes!!

So peaceful in her cozy sleeping bag from a Belgian friend

Learning to sit up!  Look at that neck control!

Her many outfits, so many of which were Hope's:

"Ray Bucknell

Little Spanish outfit

Another Spanish outfit

One of my favorites

Happy Halloween (this was Hope's - she never wore it because she slept through Halloween)

The surgery date has been looming in the distance for quite a while.  I can't believe it's next week. I've done a pretty good job at keeping it off my mind.   Many people ask how I am doing.  My reply is usually that its still too far away to think about.  It won't be real that we have to give her back until I start to pack bags and we pull into the lot at Children's on Sunday.    We have an incredible support crew.  So many people have offered to help and we're so grateful. Of course, both of our families have offered to help.  Hope and Sanders will go to Chris' parents for a few days at the beginning, but mostly I want them to be home because it will force us to get out of the hospital to be with them, creating a little more normalcy and making things a little healthier for us.  Mireya won't remember if we're not there every minute of her hospitalization.  My parents offered to come up, but I'd rather them be here when we can spend time with them and don't have to juggle the hospital.  We've already celebrated Thanksgiving with our immediate family, just in case we're inpatient (50/50 chance).  A group of friends have started a meal train, for which I'm so grateful.  Some are even bringing food this week for us to freeze.  Others are planning to bring food to us in the hospital.  Lots of our friends have offered to come play with Hope, so many that we set up a spreadsheet.  We have people to keep her company pretty much every day of the predicted hospitalization at this point.  I feel like we're going into this in good shape.  Its so much easier when you know what to expect.

Visiting the Prouty Garden for the first (and hopefully not the last) time

Honestly, I don't really know how I'll feel until we have to hand her over next week.  She is a lot bigger and stronger than Hope was, but we've also had time to get to know her.  Either way, it's never easy to hand your baby over to someone who is going to crack their chest open and put their heart on bypass.  I will do my best to update on FaceBook, Instagram, and here.  Please keep us in your prayers.

Side by side of my girls at 6ish weeks old